7/26/2009

As you can probably tell by the image and title of the post, this is the official announcement of Maxapalooza. Melissa has been working day and night to pull this together and we have been wanting to wait for the headliner band to be found and signed and this just happened on Friday (while we were at Legoland with the kids on a "surprise visit" no less). We have signed The English Beat (with Dave Wakeling and Ranking Roger for all those who remember) and are happy with the outcome. We looked at a lot of bands and The English Beat were very accommodating and easy-to-work-with, a big plus since this is our first event and are still learning.

So, what's all this for? Where does the money raised go? It goes to fund an innovative neuroblastoma (and it's close cousin medulloblastoma) research consortium headed by Dr. Giselle Sholler and HQ'd at the University of Vermont/Vermont Cancer Center. Most of you know Dr. Sholler from our blog so I won't go into much detail here. Here is a PDF describing how your money is used to help save kids from this common yet overlooked cancer. However, I also wanted to let you read a letter from another angel parent, Bob Piniewski who started an effort called People Against Childhood Cancer or PAC2. The context of the letter doesn't matter here. What does matter is his message, which he has graciously allowed me to use on Maxapalooza.com (thanks Bob) and which I include here as well:

Childhood cancer is considered "rare". Rare has two meanings in this case: Happening to your child or someone else’s. One in 300 children will be diagnosed with cancer before age 20. That’s 46 kids every school day. 12,500 diagnosed every year. 3,000 kids, or 1 in 4 or 5 will not survive. It is the #1 killer disease of our children today, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Each year 35-40,000 are in treatment. Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year! Does that sound RARE?

Right now, two major fundraising organizations for childhood cancer research are St. Baldrick's Foundation and Alex's Lemonade Stand. They rely on parents to shave their heads or sell lemonade to raise money for childhood cancer research. To save the lives of the children being raised in the richest nation on earth. Think about that.

And the medical industry even agrees! And write about it! (Cure Today – Picking up the Pace - Igniting progress in the cure of children with cancer)

To paraphrase - “we must enlist friends and families of children with cancer to secure funding for research.”

What?

While it sounds like a bad comedy, it is a national tragedy. What are the last 2 national tragedies? When the shuttle went down, did we ask the astronauts families to figure out the problem with the O-rings? After 9/11 did we ask the victims’ families to "help us out with this war thing?" Yet it's our approach for dealing with the #1 killer disease of our children today!

And don’t believe that research into adult cancers is transferred to our kids. Right now the treatments are “down-sized” adult doses. And the results? 60% of survivors develop secondary cancers, infertility, major organ damage, developmental problems or other issues.

We are so grateful for those that have helped us get where we are, and will be there to help make sure Maxapalooza is a success. As you may have noticed, Maxapalooza is much more than an ordinary fundraising event that just so happens to be raising money to fund neuroblastoma research. In a way, it's a living tribute to Max. Which makes it difficult at times to "settle" for things - it also likely makes us difficult to work with but luckily we have surrounded ourselves with fantastic people who like us, are inspired by Max and what he represented and so work on our behalf in a way that is consistent with our beliefs and desired outcomes. Some of those people include Leo Benevidez at YMI, Chris at Grind for Life, Grant at Sport About, Elizabeth Wainwright-Alkhas, and Craig and Nelson at Premier Jet. Also some the committee making this all happen and supporting Melissa including Alessandra, Andrea, Kristi, Lisa, Lori, and Marcina & Neil, and Randee. Thank you so much - all of you - for your help and support in getting us where we are today! There's much more to do, it's just started, but without your help Maxapalooza would have never even gotten off the ground.

Tomorrow, we leave on a little vacation. It's nothing extravagent. We're going back to South Dakota to visit with Melissa's family. We'll be saying on a lake the whole week, the kids will have a blast fishin' swimmin' & boatin', and hopefully Melis and I can slow down for a few days to catch our breath. We also are planning on meeting Donna Ludwinski (mom to Erik: 23 and still kicking NB's ass) and whatever of her clan are able to make it to Minneapolis to attend an NB fundraiser.

This summer - as I presume all summers will be - has been tough. Bookending the start and end of summer are Max's birthday (June 30) and his angel day (August 31). With "the year" mark approaching rapidly, I cannot believe it has been this long that we have been without our perfect little boy. Each day, I find myself missing more and more of him and what I would give to have him back if only for one more day.

7/10/2009

Not much else to say. Missy Morgan passed away on Wednesday from breast cancer. Her son Ryan passed away yesterday from neuroblastoma.

My Melissa wrote the following on Thursday night but never posted it:Today I'm reminded that there is pain in this world greater than my own, which at times seems impossible. If you've never followed along on SuperRyan's journey through NB as his mother battled breast cancer... well... then you don't know pain. Ryan's been in the fight since 2004 and, like my Max, he has unfortunately not been able to find the cure and is home now simply battling the pain. Both he and his mom, Missy, are on home pain care. Last night his mom, Missy, passed away. How much pain can a family be expected to endure? All at once?

I don't have a single favorite memory of Missy. I have many. She was one of the several NB moms whose unsolicited advice and encouragement I was always happy to receive. Here are some of the emails and blog comments Missy wrote to us over the years.

what a beautiful face, a beautiful spirit. We think of you everyday and pray for your strength.Missy Morgan

Just wanted you guys to know you have been on my mind. It is so painful to think of how much you must miss Max. I wish there were someway to relieve that. We are praying for you to be able to stay as strong today as you have been the last three years.Love, Missy

Hi Andy and Melis, Just checking on you guys this morning. Max is getting the same chemo as Ryan and they let us do it all at home. The visiting nurse comes the first day and accesses his port. sometimes she brings the irinotecan with her and sometimes they deliver it separately. anyway, it comes in 5 bulbs, one for each day and we keep it in the fridge. I don't know the physics of the bulb, but we just hook it up to his line and it pumps in over an hour. his temodar is oral, which I think it always is. you might ask if ya'll could do the same so Max doesn't have to go to the clinc. I know they have one more kid doing this here at CHOA. We are praying for ya'll.Have a great Sunday,Missy Morgan

Hi Andy and Melis, the new pics of Max getting accessed just broke my heart. I'm sure you're not short on suggestions, and I hesitate to make one, but-- If Max is only having a blood draw could he just have an arm stick? Ryan always prefers this to accessing his port. As a matter of fact, a week ago at the clinic he insisted on a finger stick, and our poor nurse just pumped and pumped his finger to get enough. Ryan's platelets are slow to respond, too and I have had the same sorts of things on my mind as well. I hope you will post the answers you get from your docs. we are praying his catecholomines drop and he gets a break. take care-Missy Morgan(superryan's mommy)

Our son, Ryan, just started the irinotecan and temodar. We go to the clinic the first day and a nurse comes out the next four to give it to him at home. He did great with that. It only works because he doesn't need all the hydration that usually comes with the chemo. The iri. only runs an hour and the tem. is oral. Could that work for ya'll so Max doesn't have to go to the clinic? Also, Ryan does better when he starts with an empty stomach. He had no nausea on those days. Good luck with it!Missy Morgan